From the Community: Experiencing Ulcerative Colitis Flare-Ups
Last updated: March 2023
Living with ulcerative colitis (UC) eventually means you will have flares. These are times when inflammation and symptoms get worse. They are uncomfortable and exhausting. To better understand your experience of UC flares, we recently asked the Facebook community, "How would you best describe what a UC flare feels like to you?"
You shared many good insights into the reality of UC flares.
UC flare-ups: so many symptoms
Many of you shared lists of symptoms that were hard to categorize! You frequently mentioned fatigue, bloating, brain fog, lack of appetite, and the struggle to sleep. Flares are rough on the entire body.
- "Chronic fatigue, brain fog, joint pain, muscle spasms, skin rashes, painful ileostomy, depression."
- "Fatigue, cramps, bloating, weakness, having 2 sets of clothing so that something fits when I’m extremely bloated. Oh, and brain fog."
- "100/10 mind-numbing pain where I can't even form sentences or thoughts. Having accidents, wearing Depends, throwing up, not eating, weight loss, joint pain, no sleep ever, no working."
"Pain, urgency, spams, abdominal pain, fatigue."
A common flare symptom that many shared is severe cramping. The gripping and twisting in the gut are very painful. It is caused by inflammation of the intestine. And abdominal pain is one of the most prevalent UC symptoms.1
- "Sharp knife in my lower belly."
- "Like being stabbed in my lower stomach and being set on fire all at once."
- "Like my intestines are being twisted and wrung out like a sopping wet rag before you hang it to dry."
- "Pain and rawness in my stomach."
Trips to the bathroom
Without question, UC flares involve spending a lot of time in the bathroom. The frequency of bowel movements increases dramatically, resulting in extreme pain and discomfort.
- "Pain and constant bathroom runs just to start!"
- "Exhausting, with the terrible cramping and very fast visits to the bathroom."
- "Twenty-plus BMs per day, mostly blood and mucus, urgency, spasms, burning anus."
- "My butthole gets raw and painful."
- "Either I can't go to the bathroom, or I can’t stop going, depends on the day."
Mental and emotional health with flare-ups
Going through a UC flare is also emotionally draining. You mentioned feeling depressed, anxious, and generally down. During a flare, your quality of life takes a sharp downturn, which impacts mental health.
- "Hopeless, anxious, dreary."
- "Depressing, painful, hopeless."
If these symptoms persist beyond flares, have a conversation with your doctor. Those living with chronic illness often endure more days of depression and anxiety than the general public. Talk therapy and prescription drugs can address depression and anxiety tied to UC.
Thank you, UC community
We appreciate learning and hearing from each of you! Thank you for sharing your experience of UC flares so openly with the community.
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